S. 1838: DeOndra Dixon INCLUDE Project Act of 2025

This bill, known as the DeOndra Dixon INCLUDE Project Act of 2025, aims to enhance research, training, and investigation related to Down syndrome in the United States. It proposes the following key elements:

Purpose of the Bill

The main goal is to authorize the Secretary of Health and Human Services to carry out a program designed to better understand Down syndrome and its associated conditions through a targeted approach known as the INCLUDE Project.

Findings

• Down syndrome is the most common chromosomal disorder, with around 6,000 babies born with it each year in the U.S.
• Individuals with Down syndrome often face unique physical, intellectual, and developmental challenges due to the presence of an extra copy of chromosome 21.
• Life expectancy for individuals with Down syndrome has improved significantly, rising from approximately 10 years in 1960 to nearly 60 years today.
• Those with Down syndrome can actively participate in many aspects of daily life, including education, employment, and the community.
• Individuals with Down syndrome have an increased risk of several medical conditions but may be at lower risk for others.
• Research focused on Down syndrome can lead to improved health outcomes for both those with Down syndrome and individuals with certain associated medical conditions.

Research Components

The bill outlines specific research elements the INCLUDE Project will focus on:

• Conducting innovative basic science studies to assess the effects of chromosome 21 on human health and development.
• Building and maintaining a substantial participant pool of individuals with Down syndrome for research purposes.
• Increasing the number of clinical trials that include or focus specifically on individuals with Down syndrome, particularly in relation to new treatments and activities of daily living.
• Examining biological mechanisms in people with Down syndrome that contribute to various health issues.
• Identifying biomarkers to better understand risk factors, facilitate diagnosis, and develop personalized treatments for co-occurring conditions.
• Investigating the prevalence of certain conditions, like Alzheimer’s disease, in individuals with Down syndrome and finding ways to treat these problems in conjunction with Down syndrome.
• Enhancing the overall quality of life for individuals with Down syndrome and their families through targeted research and support.

Coordination and Oversight

The bill requires the Secretary of Health and Human Services to ensure that related research activities by different institutes and centers within the National Institutes of Health (NIH) are well-coordinated. This includes avoiding overlap in research efforts and focusing on non-duplicative studies.

Technical Assistance

The Secretary will also provide technical assistance to support organizations and researchers involved in the INCLUDE Project.

Reporting Requirements

It mandates the Secretary to submit biennial reports to Congress detailing the research efforts and outcomes related to Down syndrome. These reports will include:

• The research entities involved.
• An overview of whether research was conducted directly or through collaborations.
• Outcomes that could inform clinical practices and medical care for individuals with Down syndrome.

Relevant Companies

None found